What’s in a Name?
HELEN Editorial
Rick Rader, MD, FAAIDD, FAADM, Editor-in-Chief, Helen Journal
“What’s in a name? That which we call a rose by any other name would smell as sweet.”
-William Shakespeare
When I was a senior in high school I took an English elective course on poetry. One of the requirements was to memorize a quote from Shakespeare and explain its significance and meaning. Naturally, I thought it was smart to find a short one.
So, I opted for: “What’s in a name?”
It couldn’t be easier. I guess my teacher saw thru this and reminded me that it was only part of the famous quote and “suggested” I come back when I mastered it in its entirety.
The ruse was up and so I had to memorize an additional ten words.
“What’s in a name? A rose by any other name would smell as sweet.”
The quote, from Romeo and Juliet has stayed with me. Its meaning has been finely tuned by the folks at No Sweat Shakespeare:
“The phrase ‘What’s in a name?’ remains a powerful rhetorical question that prompts introspection about the weight and value we assign to labels. It challenges individuals to look beyond surface-level attributes and consider the intrinsic qualities that truly define a person or thing. Its timeless relevance continues to resonate across different media, emphasizing the complexity of identity and the limitations of mere labels in capturing the depth of human existence. Psychologically, the idiom delves into the concept of identity formation. It aligns with philosophical inquiries into the nature of selfhood and individuality. It poses fundamental questions about the extent to which external labels shape one’s sense of self and whether the core essence of a person transcends such labels.”
I only wish No Sweat Shakespeare was around in the mid 60’s when I signed up for what I had hoped would be a “gut course” (which I understand is now known as a “blow-off class.”) Thankfully, it wasn’t, and I did learn to appreciate how poetry can enrich our lives.
So, what’s in a name? How does it relate, influence, and impact on the lives of people with disabilities.
I have had the privilege of serving on the Executive Committee of Friends of the National Center for Birth Defects and Developmental Disabilities (NCBDDD) at the Centers for Disease Control and Prevention (CDC).
“The National Center on Birth Defects and Developmental Disabilities (NCBDDD) was established in April 2001 as a result of The Children’s Health Act of 2000. The supporters of the center’s creation wanted to raise the visibility of child health and disability at the CDC. From its inception, the NCBDDD included the established programs in birth defects, genetic disorders, developmental disabilities and disabilities and health, with a more than 30-year history in surveillance, research, and public health practice, including the training of public health professionals in these respective fields.” (American Journal of Preventive Medicine, Dec. 2012)
The NCBDDD has certainly adhered to its mission and has made great contributions to our understanding of “birth defects,” and how the implementation of strategic programs can help this community.
But not only would The Board have had concerns about the use of the “D” word, but so do thousands of individuals, families, advocates, and supporters do as well. There is an ongoing movement to drop the “D” word and substitute it with a less derogatory, and demeaning term.
People with congenital conditions (which seemingly is the preferred term) do not want to be thought of as “defective.” They don’t want the stigma of the idea that they were improperly designed, unable to function, were unreliable or needed to be discarded and replaced… all concepts related to “things” that we have determined to be “defective.”
The terminology of the disability rights movement has seen radical and positive changes. We appreciated that The Presidents Committee on Mental Retardation (PCMR) has been changed to The Presidents Committee for People with Intellectual Disabilities (PCPID), we applauded the rebranding of the Association of Retarded Citizens (ARC) to simply The Arc. We released the white doves when The Association of the Severely Handicapped simply became TASH. Among the early adopters of the need for appropriate language was The American Association on Mental Retardation which evolved into The American Association on Intellectual and Developmental Disabilities. The Special Olympics gets the credit for implementing the “Spread the Word to End the Word” campaign which galvanized the country in dropping the use of the word “retarded.” Even our friends across the pond responded to the need to appreciate the impact of labels when they dropped The Spastics Society and became the British Cerebral Palsy Association.
The offensive terms were historically clinically acceptable descriptive terms (examples: idiots, morons, imbeciles, and mental deficient,) and were never meant to be derogatory or insulting. The terms took on new meaning when they were hijacked by popular culture and were used to insult, degrade and demean individuals.
There is no argument that the term “birth defects” is destined to the landfill. But when it comes to “officialdom,” it takes more than a sensible resolution. The National Center for Birth Defects and Developmental Disabilities has its roots in Federal statues, and it requires Federal legislation to make the change.
When the Presidents Committee for Mental Retardation opted to change its name to the Presidents Committee for People with Intellectual Disabilities it required law signed by President Obama to legally change its name (Rosa’s Law was enacted in 2010. It was inspired by then nine-year old Rosa Marcellino, a young girl with Down syndrome who didn’t like being called “retarded.”)
Right now, the NCBDDD is fighting for its continued funding and support. If Congress doesn’t act to continue supporting this jewel the single worst term it will have to contend with is the one that is spelled C-L-O-S-E-D.
HELEN was proud to support the proposal to Congress to continue the unfinished work of the NCBDDD.
I consulted with Al (ChatGPT) and posed a question about dropping the term “birth defects.” Here is what was suggested:
You’re right—many people find “birth defects” stigmatizing because it frames the person as “defective” rather than describing a medical difference. As language has shifted toward respect and precision, several alternatives are now commonly used, depending on context.
Common alternatives (most widely accepted):
Congenital conditions, Neutral and clinical; emphasizes that the condition is present at birth without value judgment. Most preferred in medical settings.
Congenital anomaly, Often used in clinical or research contexts. More technical, less emotional.
Congenital difference, Emphasis on variation rather than deficit; frequently used in advocacy and disability communities.
Congenital disorder, Still medical, but less harsh than “defect.”
Structural or functional difference present at birth, Longer but very person-centered; often used in policy or education.
Person-first or identity-respecting language:
Child/person born with a congenital condition, Puts the person before the condition.
Difference in development before birth, Useful in counseling or family discussions.
Condition-specific framing (often best practice)
Instead of a broad label, many professionals simply name the condition:
“Spina bifida”
“Cleft lip and palate”
“Congenital heart condition”
This avoids generalizing language altogether.
Terms increasingly avoided:
Birth defect – seen as stigmatizing and outdated
Deformity – strongly negative and largely rejected
Malformed – rarely appropriate outside very narrow technical contexts
Bottom line, if you want language that is:
Clinically correct and respectful: congenital condition
Advocacy-focused and humanizing: congenital difference
Most precise: name the specific condition
From Dr. Rick Rader, MD, Editor in chief, HELEN:
I certify that I requested that ChatGPT provide suggestions for alternative language for “birth defects” for the purpose of idea generation and that I have reviewed, edited, and take full responsibility for the final work above.